Last year in July, the International Epilepsy Congress in Rome explored the question of “What is Epilepsy”. Gordy Slack wrote an article about the findings of the Congress’s second day stating, “What is epilepsy? The most common and obvious definition is the propensity to have seizures. Does that mean that if a doctor can make her patient’s seizures stop, she’s ‘cured’ the patient’s epilepsy? Most neurologists act that way; once seizure-free, a patient is typically sent on their way unless and until they seize again. But there’s a growing consensus that epilepsy goes beyond seizures. In the words of Harvard epileptologist Frances Jensen, ‘Seizures are often just the tip of the iceberg.’”

I read this article feeling as if someone where seeing me and others like me for the first time. I know that temporal lobe epilepsy is a constellation of elements that are separate from the actual seizures, but are connected by the area of the brain in which they occur. I have had the experience of some of the seizures stopping, or in some cases, one type of seizure, and still feeling as if it were all going on behind the scenes. The best example I can give for this sensation is the use of Botox for migraines. I became so crippled by migraine pain that Botox was my last resort. The shots do indeed stop my migraine pain most of the time. They do not stop the other parts of the migraine, though, such as the nausea, paralysis of one side of the face, auras, tearing of the eye, emotional rollercoaster feelings, and so forth.

I’ve learned how to recognize when I am actually having a migraine even though I can’t feel the pain. This is important because I need to alter my behavior and be prepared for other problems. The same was true for me with my anti-seizure meds, the AEDs. When they did stop the seizures, it felt as if the seizures were continuing behind the scenes, behind the veil of the medication. The drugs did nothing to stop the entire cycle, of which the seizures were only a part.Now that I am unable to take AEDs, the temptation is to focus on the seizures. How do I stop the seizures or prevent them and, at the very least, minimize the damage and pain? To confine my focus in this way is to only see and feel the tip of the iceberg.

At this point, I will avoid the obvious Titanic comments and go on to say that to expand the awareness to the entire cycle is extremely healthy and helpful. If you know why you are compelled to feel a certain way at some point in the cycle, it’s far easier to figure out the reason than to beat yourself up about the oddness of the situation.

I guess these statements call for another example. I have had a rough seizure cycle the last three to four days. For me, my body is like a bucket that collects each day’s problem issues. These would include too much, or any, exposure to fluorescent lights, loud noise, certain screen changes on the TV, too much computer work and too much emotional upheaval with family or friends, not to mention food problems. Too much of anything, really, even good things like too much yoga or too much of a family birthday can fill the bucket.

Once the bucket is full, then the seizure cycle begins. The seizures can cause pain, fear and a feeling of unbalance. And, seizures are not the only things happening to me during the cycle. So if I have the seizure and am dealing with the pain, sleeplessness and so forth, I also have to remember that feelings of withdrawal, fear and other irrational responses are part of the cycle. Ignoring them or trying to stop them may trigger another seizure. I have to allow these feelings to exist, while being aware that they aren’t necessarily real. In some ways it splits me in two as I look at the feeling and acknowledge it while being aware that it is not real and not lasting. And, yes, I know that sounds pretty strange: acknowledging the existence of something that doesn’t exist! It is, however, the kindest way I can deal with the condition and not feel waves of self doubt and anger on a regular basis.

If you haven’t already, read the entire article about the International Epilepsy Congress by clicking this link.

When are the times that the condition was active in my life? Probably between the ages of one and twenty-five. It went into remission after that time with only dreams and brief appearances and migraines to show that it was around. It was as if a wall surrounded the condition to protect me from it.

During those years, I worked in the arts and in the fine jewelry businesses while raising our daughters and going back to college. These activities fed my creative side, the right side of my brain. Even when I was in college and forced to expand the left side of my brain, I was happy and creative doing so.

When I finally graduated with the degree in Medical Record Administration and received my credentials as a registered health information administrator, I started to work in the hospital environment. At first I thought I could separate the environment from my inner being. I soon learned this was impossible.

University Hospital at the University of New Mexico was my first job. It was an exciting place to work. Each morning I arrived before sunrise, which gave me the breathtaking opportunity to watch the sun coming up over the mesa in an amazing display of reds and pinks. Artwork by famous New Mexican artists adorned the hospital walls. Native Americans from the various reservations, many of whom did not speak English, came and went through the halls. Colors, sounds, tastes, and textures of a foreign country filled each work day, and I loved it!

The only problem was the work that was seeping into my consciousness, the result of yelling physicians and angry and spiteful co-workers. This scenario played over and over again.

I changed jobs often, moving up the management ladder for more income. As I did, I put more stress on my system. My last job in Albuquerque required that I be responsible for more than 150 employees and to make sure that the 500-plus doctors provided timely and correct documentation. The stress from trying to keep the physicians and hospital in compliance with all applicable laws was intense. My boss did not like to be told when his actions broke the law, so he did what many managers do in these situations: he fired the messenger. But, he had to eliminate a five-person management block to get rid of me. He did it by claiming he was downsizing to save money, a move that later cost the hospital system millions of dollars.

The cost to me personally was horrible. I landed a higher-paying job in Texas, but the misplaced guilt that I was responsible for four good people losing their jobs tore at me. I grieved for my lost position because I missed New Mexico and my friends and I hated being a victim of waste, fraud, and abuse. It began to pull down that wall I carefully constructed around my condition, although I did not know it at the time.

I left what most people would consider a great job after three years to accept an offer to work for 3M Health Information Systems, which developed software applications used in the health information management areas of most of the nation’s hospitals. By then, I was experiencing an increase in the migraines. They went from weekly and somewhat manageable to daily and nearly out of control.

My new job required a crash course in marketing and Six Sigma, along with other college-level business courses. The migraines worsened with each course. I tried to offset the migraines by sketching at night.

The company’s headquarters was in Salt Lake City, but I worked from home when I wasn’t traveling to Utah and to hospitals around the country. I took my sketch book and drew at night in my hotel rooms in hopes of stilling the pain.

The pain finally got so bad that I spent two weeks in agony. That’s when I called my doctor. She told me she had tried every migraine medicine available to me and that they just didn’t work. Our last hope was Botox. By that point, I was willing to try anything, even if it meant that I would walk around with a frozen and unnatural look on my face.

I checked around for a neurologist who treated migraines with Botox injections. When I found one I felt comfortable with, I discovered that the cost was through-the-roof and that our insurance would not cover it because Botox was not FDA-approved as a migraine treatment. So, I called a dermatologist who worked with me to administer the shots to the area of pain. She also made sure I did not look as though I had a stroke.

I went in every three months. We experimented to see what worked and what didn’t. For instance, I asked her to deaden alongside the trigeminal nerve down the side of my nose, but this turned out to be a mistake as it moved pain to the roof of my mouth and into my teeth.

Botox was my savior for a couple of years, and I thought all was well as I went about, bit by bit, tearing down the wall with stress, spreadsheets, computer time, late nights, meetings full of arguments, and left-brain requirements until I had pushed everything out of my life.

One boss wanted to get rid of me by using the excuse that I was too right-brained to work for the company. How amazingly correct she was, and how blind I was not to see it. But I was stubborn. I kept pushing myself into the left-brain world, a place that was clearly wrong for me. I thought that because I was successful at my job, that I should do it. I did not see the toll it was taking on me or on my family until it was too late.

My husband and daughters saw what was happening to me, but they did not know what was wrong with me. They attributed my actions and moods to a lack of love. They did not see the “withdrawals” or the blankness as anything other than a reflection of my feelings for them.

The condition descended on me gradually and steadily during a six-year period until, in the end, I found myself on the floor of my bedroom, my arms covering my head, waiting for death. The wall was completely torn down by stress, stimulants, the wrong food, travel, other people’s energy, misdiagnoses, and my own ignorance.

By this time the pain had become unbearable and I doubted of my own sanity. It was at this point my therapist sent me to the psychiatrist who diagnosed my Temporal Lobe Epilepsy, and quite possibly, saved my marriage and my life.